Multiple system atrophy (MSA) is a progressive neurological disorder that affects adult men and women. It is caused by degeneration or atrophy (shrinking) of nerve cells in several (or multiple) areas of the brain. This can result in problems with multiple bodily functions such as speech, movement, balance and blood pressure control.
MSA is a rare disease with only around 3,300 people in the UK and Ireland currently living with it. This means that most people will never have heard of the condition, unless they themselves have already met someone with MSA. There is currently no cure.
My uncle Gregory Wilsdon is an intelligent, sharp-witted, optimistic and strong individual who was diagnosed with MSA just over three years ago and is now sadly on borrowed time.
He and his wife recently made a video of their own, which documented his experiences suffering from the disease and his daily struggle (embedded above).
This video had an incredibly profound effect on his friends and work colleagues, who found it so moving that it raised enough money for his wife Kate to take a break from her full-time job so she could provide him with around the clock care.
It also profoundly affected my own perspective. I had to think much more deeply about the type of isolation MSA has inflicted on my Uncle and the effect of caring for someone suffering with such a physically debilitating condition. I thought about how important it would be to document this experience, and help more people understand what it’s like living with MSA, or even other degenerative illnesses with similarly devastating effects.
My goal is to provide a larger platform to present my Uncle’s experiences, by creating a longer more in depth documentary about his journey.
The perspective will remain his own, with his video and words as the foundation of the story being told. I would like the film to continue give voice to some of his thoughts and emotions as he battles MSA, but my hope is to expand on his writing with the perspectives of his wife, sister and friends, which currently his words alone cannot provide.
I myself am a Director and Videographer with over 15 years of experience from feature films, to web series, to corporate events and online advertisements. I have the unique skillset and ability to be able to capture this story as a one-person crew from the intimate and unique perspective of a trusted family member.
My uncle lives in London, while I am based in NZ and through crowdfunding I am trying to raise money to help cover the expenses of my travel to the UK and film equipment required to film with his family while I stay with them. The second, and ultimate goal is to raise enough money to cover the post production expenses for the film so that my uncle might get the opportunity to see it. I am determined to tell my Uncle’s story regardless of how much is raised, but every dollar counts and will go a long way to helping make that story a reality.